by Destinyrae

Created on: November 12, 2008   Last Updated: January 27, 2009

Imagine, if you will or if you can, having to live in complete isolation with no sight, no sound and no voice. Imagine living that nightmare at only nine years old. Imagine having to stay that way for a month.

John Talbott of Buchanan can easily imagine the above scenario because he lived it. Talbott was born with a rare birth defect known as Treacher Collins syndrome or TCS. It only occurs in approximately every 10,000 births. Characteristics of the genetic defect include various facial abnormalities such as downward slanting eyes, malformed or missing ears, underdeveloped bones and cleft palates. Talbott suffered from all of the above.

At Talbott's birth, the doctor had no idea what was wrong with him. His mother was told to take him home and let him die, but Talbott's mom was a registered nurse and she would not give up on her child. A diagnosis was made.

Talbott's father worked for AT&T in a position that required the family to move on numerous occasions, and his father negotiated each job transfer to get them closer to a specialist to help his son. Physicians took a special interest in Talbott's case because of the rarity of his condition and he sometimes felt like a performer on a stage enduring stares and murmurs even from the professionals.

The children at school gawked at him, too. Ridicule was a normal part of his life. Some of the doctors he saw would refuse to look him in the eye, offering him no hope for the future, and referring to him as a "retard" despite his IQ of 136 at age five. It was a typical mistake to see his facial features and think of retardation or Down's syndrome, but that error was a far cry from the truth.

In 1977, at nine years old at a children's hospital in Philadelphia, Talbott was confronted with a huge dilemma whether or not to have reconstructive surgery. The doctor's gave him an 80% chance of survival. The opposing 20% was the factor that made the decision so difficult. Talbott's mother and father left the choice to him. "It was hard. I figured I could do it or spend the rest of my life looking like that," he said.

The procedure did not go smoothly. Scheduled to last eight hours, the surgery took 12. The surgeon's scalpel slipped, collapsing one of Talbott's lungs. He died once on the table, and had to be resuscitated. He had to have a blood transfusion. He also suffered a reaction to the general anesthesia, causing his tongue to swell, and they had to give him a tracheotomy so that he could breathe. He developed double

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